The continuing adventures of my life not only as an artist, wife, adventurer, dreamer, aspiring female “Bob Villa”, and mom...but now as a widow and single parent...

Saturday, January 24, 2009

The ugly remnants of Cancer…

They are everywhere. The little reminders of Cancer. How it changed our life. How it slowly killed his body. The beast itself is now gone, at least in David’s body, but the price we paid was high. We could never quite beat it down, and in the end the only thing that silenced it was when it finally silenced David. Irrevocably. And now I have all of these damn signposts of our battle with the infernal disease.

The shower curtain rod that curves outward, creating more room in the tub, which made bathing David easier after the stroke. The blasted ramp that juts off my porch. The ramp itself was impeccably done...a couple guys from work just showed up one day and built it. It is the nicest damn ramp I have ever seen...looks better than my porch that is in serious need of replacement. And yet, it is ugly. It may be a nice wood walkway to some. But to me it is a reminder of what the Cancer did to David. Of how he lost his mobility after the stroke, and then as he finally began to recover from the stroke, how that tumor came back and took away his freedom once again. And as that insidious mass began to grow and press on his brain, David’s strength and motor skills on his left side started to wane once again. And how in the end he was stuck in the wheel chair that he hated so much.

Then there is the cane. God how he hated that thing. And as he became more and more dependant on it, Alec became more fascinated with it. He was three and a half...so he was mimicking david. He used to walk around the house with it. It made David insane. And I remember one day, after Alec was in bed, david shaking that cane and saying he wanted that cane gone when he was. He did not want it lying about reminding Alec of him like this. He wanted Alec to remember him in his vitality. The playful, attentive dad that used to pick him up and throw to the couch and than tickle him unmercifully. He did not want to be remembered like that. What he called, "A shell of his former self."

There are so many things. All sitting around the house. Hidden in the basement or the garage. Leering at me. The bathing bench. The commode. The cane. The gait belts. Oh, and I must not forget the wheelchair. Not his nice comfy one he had near the end. The insurance company felt that since his tumor was terminal, there was no need to purchase it, so we just rented the cushy one. At the time I was horrified. Basically they were saying no need to purchase it, when we could just rent the damn thing monthly until David was either completely bedridden or dead. And yet, in reality, it was probably a good thing. What use do I have for a wheelchair specially configured for David? What would I do with it? It would have just sat around rotting like everything else. So mercifully, that is gone. But his transport chair is still here. The one we had to buy before they realized that even when and if he did recover from the stroke, the bloody tumor was going to do its business and inevitably take way his strength again...and that he should have something more comfortable and easier to maneuver. Mind you, David was a powerhouse and his use of the wheelchair was confined to the end. He was mobile for much longer than they anticipated and defied what statistically and medically his body should have been doing. But he could not bypass it completely and we did end up using it in the final months.

So, all of the crap just sits here. I plan to donate them. The equipment that is littering the dark corners of our basement still have a purpose and can help others. I know how insane medical bills can be and if someone is in need of this equipment, than odds are they have all sorts of other medical bills as well. I am looking into a donation program that specifically benefits patients in need. Although I would love to just go out there and beat the shit out of the wheelchair with a baseball bat, it would not be productive. It might make me feel better for a brief moment, but I know that the equipment can serve its purpose so much better by helping someone else in need with disabilities. And although transitory as it might be, beating the crap out of the equipment would not have any long satisfactory effects.

5 Comments:

Skye,I am sorry that you have the reminders of your struggles all around you. I am sorry - honestly back when David was alive and you were relaying the daily struggles I surely didn't think about all the devices you needed to use on a daily basis to keep him at his best. Why those never came to mind for me (b/c I, too have them), I don't know. Not only were you dealing with the dreaded cancer but then you also had the devices that even then reminded you of David's failing health.

I commend you then and now for having the strength (physically and mentally) to use a gait belt (often not easy to use), the transfer chair and the wheelchair. All aren't pleasant to have back then and now as he is gone.

I, too, would want to go out and beat all the devices you were forced to have around you to care for David and now the unpleasant reminders of the turns your life has taken. However, for you to donate them is also a wonderful thing. I know you are looking for a donation spot and I can recommend one for you - it is in Pewaukee and called Kati's Closet. It is a place I have gone already to rent devices for my special needs daughter. They offer parents/people the chance to rent the devices for free or a small donation. I went on a Saturday with her physical therapist and brought 3 things home for her - a walker, a stander and a device to help facilitate crawling. I know this is painful for you but know that you helping others (like me).

Kati's Closet I believe is mainly open on Saturday's or by appointment. It is well known and I often read about it as some parents on chat boards around the country mention it and tell others to look for something like it in their community. It seems Kati's Closet is a rare commodity.

Any way - I'm sorry Skye - I guess for me I look around at all my devices for my daughter and I've gotten "hard" to their existence and the unpleasant reminder of my daughter's disabilities and our life's struggles. I'm sure at the time David was alive you did too. They were necessary evils - just like they are for me. However, now they are things you'd like to beat the shit out of as David was in his last year with cancer.

Good luck with where ever you decide to donate. But please know that Kati's Closet is well known and during my visit there I saw many donators as well as many coming in to rent devices for their loved ones.

Skye-I would encourage you to get rid of those items as soon as you can. Like you said, he did not want to be remembered that way. Litter your home with the items from when David was healthy and strong.

When Roger was first in the hospital, people encouraged me to take pictures of him so he could eventually see how far he had progressed. I took pictures of all the people that came to be with us. When we found out Roger was never recovering and was only going to get worse, I deleted those pictures. I did not want to ever see him like that beyond what I can remember. The memories are enough to haunt me.

But do it only when you are ready. I think it may help you a lot though.

Also, I think you do need to find some object whether its a brand new pillow or something to get your anger out on. The longer you keep it inside, the worse it will become and it will leak out.

I "2nd" Sally's comment... reading your post made me dreadfully sad and it got me to imagine what if I were you and in your shoes -- how might I react? How would I feel? I'd be depressed at first and then forced into action I think. Since, whenever faced with trials in my past this has been the case... so I felt that dread and grieved for you, while also silently applauding your direction propelling you again to take action. We know it's a survival tool--sometimes you have to stop feeling just to take that action... just put yourself into "doing" mode to get something so difficult accomplished.

I think of you always.

...another friend of mine, whom I've known well since I was 9 was diagnosed with pancreatic cancer 2 years ago. He had chemo and went into remission. Last week I found out from his wife that he now is diagnosed with thyroid cancer. They have a son as well... I will be there for them, and again faced with this abominable cancer that cheats us out of cherished living moments in one way or another, but I will press on as they will, and together fight for all that is light and good.

"We shall draw from the heart of suffering itself the means of inspiration and survival.” -Winston Churchill

We only had a borrowed wheelchair, too, and it was bloody heavy. That went back straight away.

I do remember having huge stockpiles of all those medicine jars of morphine MST and anti-inflammatories and surgical dressings, and loads of other medical supplies as well.

I could have drugged myself into a terminal stupor then, and still have had enough undiscovered bottles left hiding around the house for a few spontaneous narcotic episodes when I found them through all the rest of that year.

Neither the hospital or the surgery would take those drugs back, since some had been opened and others were close to their use-by dates. But finally our District Nurse came up with the address of a charity health organisation working out in Romania.

They weren't half so fussy and could use anything I sent (it was soon after the Revolution, and conditions were pretty desperate). By chance I travelled to Romania later in the year on business and saw the desperate conditions myself. It was good to see that those things will have made a small difference somewhere, although it was awful to see people suffering so terribly.

I wonder if you could somehow now pack up your stuff to an organisation shipping medical equipment out to Gaza. In a similar way to Romania in 1997, the humanitarian disaster there right now is such that they could likely use all the help they can get.

I had a quick look around the internet, and this was the best link I could find for donating medical supplies:

Perhaps your local branch of the International Red Cross, UNICEF or Save the Children might also be able to provide alternatives, although generally these organisations solicit cash, rather than supplies. Good luck!

Sally,As always, you have a valuable insight into my world. I think of you often now and how you continue to move forward…caring for both of your children and the complexities of caring for someone you love who is disabled.

Thank you for the information on Kati’s Closet as well. I was amazed when I began researching, that there were so few in the community accepting these devices. I know mine is not a singular experience and yet I think much of society tends to not acknowledge those in failing health or living with disabilities. It is too difficult and uncomfortable to them, so they turn their heads. Pretending it doesn’t exist. But it does. And I am glad there are organizations that accept these pieces of equipment. They tend to be costly and extremely valuable to those in need…

Roads,Sometimes I marvel at how similar our journeys were…albeit yours is much further in the past. Different Cancer. Different lives…and similar none-the-less.

In the end, Hospice took all of the narcotics. It was a legal thing. They could not leave them in our home…lest I slip into depression and take my own life. Which I can easily see how some do. Although I never seriously entertained that thought, I had some very dark nights and I can see how hospice would not want something so easily accessible to those in mourning and sometimes driven to insanity by grief.

I think that is wonderful that you were able to put the drugs to good use, helping others in need in Romania. I am sure they made more than a small difference in someone’s life out there.

I am a firm believer that we all should do as much as we can to help others.In the last 2 ½ years I have been shown so much kindness and support. I try whenever I can to give that same consideration to others that pass through my life. And the community as well. Not to say that I still don’t need help myself, but I find helping others helps me as well…

I appreciate you taking the time to do an internet search for me. Time is a precious commodity for me right now! I appreciate the link and I will check into that as well!